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upcoming
events

  • Sarcoidosis Month
    Sarcoidosis Month
    Wed, 01 Apr
    Online Platforms
    01 Apr 2026, 00:00 – 30 Apr 2026, 23:50
    Online Platforms
    Sarcoidosis Awareness Month, aimed at raising awareness and understanding of this rare inflammatory disease.
  • World Parkinson's Day
    World Parkinson's Day
    Sat, 11 Apr
    Online Platforms
    11 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Parkinson's Day is observed annually on April 11th to raise awareness about Parkinson's disease and its impact on individuals and communities.
  • TInMan
    TInMan
    Sun, 12 Apr
    Prime View Adventure & Leisure
    12 Apr 2026, 19:00 – 23:00
    Prime View Adventure & Leisure, Southward Dr, Olifantsfontein 410-JR, Olifantsfontein, 1666, South Africa
    vbmcghgf,cg,chm,
  • International Pompe Day
    International Pompe Day
    Wed, 15 Apr
    Online Platforms
    15 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Pompe Day is observed annually on April 15 to raise awareness of Pompe disease and support the global community affected by this rare genetic disorder.
  • World Hemophilia Day
    World Hemophilia Day
    Fri, 17 Apr
    Online Platforms
    17 Apr 2026, 00:00 – 23:59
    Online Platforms
    On April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
  • World PID Week
    World PID Week
    Wed, 22 Apr
    Online Platforms
    22 Apr 2026, 00:00 – 29 Apr 2026, 23:59
    Online Platforms
    World Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
  •   FOP Awareness Day
      FOP Awareness Day
    Thu, 23 Apr
    Online Platforms
    23 Apr 2026, 00:00 – 23:59
    Online Platforms
    FOP Awareness Day is observed annually on April 23 to raise awareness of fibrodysplasia ossificans progressiva, a rare genetic disorder that causes soft tissues to gradually turn into bone.
  • Immunisation Week
    Immunisation Week
    Fri, 24 Apr
    Online Platforms
    24 Apr 2026, 00:00 – 30 Apr 2026, 23:59
    Online Platforms
    World Immunisation Week is a global campaign that takes place from April 24 to 30 each year. It aims to promote the life-saving power of immunization to protect people of all ages against vaccine-preventable diseases.
  • Malaria Day
    Malaria Day
    Sat, 25 Apr
    Online Platforms
    25 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Malaria Day (WMD) is an international observance commemorated every year on 25 April to raise awareness and highlight the global efforts against malaria. Globally, 3.3 billion people in 106 countries are at risk of malaria.
  • Undiagnosed Day
    Undiagnosed Day
    Tue, 28 Apr
    Online Platform
    28 Apr 2026, 00:00 – 23:59
    Online Platform
    Undiagnosed Day—isn’t just a day, it’s a movement, a day not about the disease, to create awareness and action for People Living With Undiagnosed Diseases (PLWUD). There are too many people living with questions that remain unanswered.
  • International Noise Awareness Day
    International Noise Awareness Day
    Wed, 29 Apr
    29 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
  • CF Genes Day 2026 - SACFA
    CF Genes Day 2026 - SACFA
    Fri, 22 May
    CF Genes Day
    22 May 2026, 00:00 – 4:50
    CF Genes Day, South Africa
    SACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
  • Swing for Independence Charity Golf Day
    Swing for Independence Charity Golf Day
    12 Jun 2026, 09:00 – 16:00
    Johannesburg, Illovo, Johannesburg, 2196, South Africa
    Join us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate

At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.

 

We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.

upcoming external fundraisers
  • Sarcoidosis Month
    Sarcoidosis Month
    Wed, 01 Apr
    Online Platforms
    01 Apr 2026, 00:00 – 30 Apr 2026, 23:50
    Online Platforms
    Sarcoidosis Awareness Month, aimed at raising awareness and understanding of this rare inflammatory disease.
  • World Parkinson's Day
    World Parkinson's Day
    Sat, 11 Apr
    Online Platforms
    11 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Parkinson's Day is observed annually on April 11th to raise awareness about Parkinson's disease and its impact on individuals and communities.
  • TInMan
    TInMan
    Sun, 12 Apr
    Prime View Adventure & Leisure
    12 Apr 2026, 19:00 – 23:00
    Prime View Adventure & Leisure, Southward Dr, Olifantsfontein 410-JR, Olifantsfontein, 1666, South Africa
    vbmcghgf,cg,chm,
  • International Pompe Day
    International Pompe Day
    Wed, 15 Apr
    Online Platforms
    15 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Pompe Day is observed annually on April 15 to raise awareness of Pompe disease and support the global community affected by this rare genetic disorder.
  • World Hemophilia Day
    World Hemophilia Day
    Fri, 17 Apr
    Online Platforms
    17 Apr 2026, 00:00 – 23:59
    Online Platforms
    On April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
  • World PID Week
    World PID Week
    Wed, 22 Apr
    Online Platforms
    22 Apr 2026, 00:00 – 29 Apr 2026, 23:59
    Online Platforms
    World Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
  •   FOP Awareness Day
      FOP Awareness Day
    Thu, 23 Apr
    Online Platforms
    23 Apr 2026, 00:00 – 23:59
    Online Platforms
    FOP Awareness Day is observed annually on April 23 to raise awareness of fibrodysplasia ossificans progressiva, a rare genetic disorder that causes soft tissues to gradually turn into bone.
  • Immunisation Week
    Immunisation Week
    Fri, 24 Apr
    Online Platforms
    24 Apr 2026, 00:00 – 30 Apr 2026, 23:59
    Online Platforms
    World Immunisation Week is a global campaign that takes place from April 24 to 30 each year. It aims to promote the life-saving power of immunization to protect people of all ages against vaccine-preventable diseases.
  • Malaria Day
    Malaria Day
    Sat, 25 Apr
    Online Platforms
    25 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Malaria Day (WMD) is an international observance commemorated every year on 25 April to raise awareness and highlight the global efforts against malaria. Globally, 3.3 billion people in 106 countries are at risk of malaria.
  • Undiagnosed Day
    Undiagnosed Day
    Tue, 28 Apr
    Online Platform
    28 Apr 2026, 00:00 – 23:59
    Online Platform
    Undiagnosed Day—isn’t just a day, it’s a movement, a day not about the disease, to create awareness and action for People Living With Undiagnosed Diseases (PLWUD). There are too many people living with questions that remain unanswered.
  • International Noise Awareness Day
    International Noise Awareness Day
    Wed, 29 Apr
    29 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
  • CF Genes Day 2026 - SACFA
    CF Genes Day 2026 - SACFA
    Fri, 22 May
    CF Genes Day
    22 May 2026, 00:00 – 4:50
    CF Genes Day, South Africa
    SACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
  • Swing for Independence Charity Golf Day
    Swing for Independence Charity Golf Day
    12 Jun 2026, 09:00 – 16:00
    Johannesburg, Illovo, Johannesburg, 2196, South Africa
    Join us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate

patient events

If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, contact us.

  • CF Genes Day 2026 - SACFA
    CF Genes Day 2026 - SACFA
    Fri, 22 May
    CF Genes Day
    22 May 2026, 00:00 – 4:50
    CF Genes Day, South Africa
    SACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
  • Swing for Independence Charity Golf Day
    Swing for Independence Charity Golf Day
    12 Jun 2026, 09:00 – 16:00
    Johannesburg, Illovo, Johannesburg, 2196, South Africa
    Join us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate

ACTIVities

Help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community by registering to be a RARE ACTIVist.

Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.​ 

#Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team and use your mobility to the benefit of those without it.

RDSA-CharityChampions-Image2.png
  • TInMan
    TInMan
    Sun, 12 Apr
    Prime View Adventure & Leisure
    12 Apr 2026, 19:00 – 23:00
    Prime View Adventure & Leisure, Southward Dr, Olifantsfontein 410-JR, Olifantsfontein, 1666, South Africa
    vbmcghgf,cg,chm,

community events

Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Contact us or follow us on Facebook for regular updates. 

  • Sarcoidosis Month
    Sarcoidosis Month
    Wed, 01 Apr
    Online Platforms
    01 Apr 2026, 00:00 – 30 Apr 2026, 23:50
    Online Platforms
    Sarcoidosis Awareness Month, aimed at raising awareness and understanding of this rare inflammatory disease.
  • World Parkinson's Day
    World Parkinson's Day
    Sat, 11 Apr
    Online Platforms
    11 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Parkinson's Day is observed annually on April 11th to raise awareness about Parkinson's disease and its impact on individuals and communities.
  • TInMan
    TInMan
    Sun, 12 Apr
    Prime View Adventure & Leisure
    12 Apr 2026, 19:00 – 23:00
    Prime View Adventure & Leisure, Southward Dr, Olifantsfontein 410-JR, Olifantsfontein, 1666, South Africa
    vbmcghgf,cg,chm,
  • International Pompe Day
    International Pompe Day
    Wed, 15 Apr
    Online Platforms
    15 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Pompe Day is observed annually on April 15 to raise awareness of Pompe disease and support the global community affected by this rare genetic disorder.
  • World Hemophilia Day
    World Hemophilia Day
    Fri, 17 Apr
    Online Platforms
    17 Apr 2026, 00:00 – 23:59
    Online Platforms
    On April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
  • World PID Week
    World PID Week
    Wed, 22 Apr
    Online Platforms
    22 Apr 2026, 00:00 – 29 Apr 2026, 23:59
    Online Platforms
    World Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
  •   FOP Awareness Day
      FOP Awareness Day
    Thu, 23 Apr
    Online Platforms
    23 Apr 2026, 00:00 – 23:59
    Online Platforms
    FOP Awareness Day is observed annually on April 23 to raise awareness of fibrodysplasia ossificans progressiva, a rare genetic disorder that causes soft tissues to gradually turn into bone.
  • Immunisation Week
    Immunisation Week
    Fri, 24 Apr
    Online Platforms
    24 Apr 2026, 00:00 – 30 Apr 2026, 23:59
    Online Platforms
    World Immunisation Week is a global campaign that takes place from April 24 to 30 each year. It aims to promote the life-saving power of immunization to protect people of all ages against vaccine-preventable diseases.
  • Malaria Day
    Malaria Day
    Sat, 25 Apr
    Online Platforms
    25 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Malaria Day (WMD) is an international observance commemorated every year on 25 April to raise awareness and highlight the global efforts against malaria. Globally, 3.3 billion people in 106 countries are at risk of malaria.
  • Undiagnosed Day
    Undiagnosed Day
    Tue, 28 Apr
    Online Platform
    28 Apr 2026, 00:00 – 23:59
    Online Platform
    Undiagnosed Day—isn’t just a day, it’s a movement, a day not about the disease, to create awareness and action for People Living With Undiagnosed Diseases (PLWUD). There are too many people living with questions that remain unanswered.
  • International Noise Awareness Day
    International Noise Awareness Day
    Wed, 29 Apr
    29 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
  • CF Genes Day 2026 - SACFA
    CF Genes Day 2026 - SACFA
    Fri, 22 May
    CF Genes Day
    22 May 2026, 00:00 – 4:50
    CF Genes Day, South Africa
    SACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
  • Swing for Independence Charity Golf Day
    Swing for Independence Charity Golf Day
    12 Jun 2026, 09:00 – 16:00
    Johannesburg, Illovo, Johannesburg, 2196, South Africa
    Join us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate

webinars

RDSA-Webinars.gif

We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.

 

Register for an upcoming webinar below, follow our Facebook page for updates and webinar details or enquire about hosting a webinar of your own with us. 

No events at the moment

conferences

Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world. 

No events at the moment

awareness months

Awareness months serve to draw attention to and create awareness of illnesses and conditions.

 

With more than 7000 known rare diseases there are a significant number of awareness days throughout the year. If you feel we have missed one, please let us know.

upcoming awareness months

  • Sarcoidosis Month
    Sarcoidosis Month
    Wed, 01 Apr
    Online Platforms
    01 Apr 2026, 00:00 – 30 Apr 2026, 23:50
    Online Platforms
    Sarcoidosis Awareness Month, aimed at raising awareness and understanding of this rare inflammatory disease.
  • World Parkinson's Day
    World Parkinson's Day
    Sat, 11 Apr
    Online Platforms
    11 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Parkinson's Day is observed annually on April 11th to raise awareness about Parkinson's disease and its impact on individuals and communities.
  • International Pompe Day
    International Pompe Day
    Wed, 15 Apr
    Online Platforms
    15 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Pompe Day is observed annually on April 15 to raise awareness of Pompe disease and support the global community affected by this rare genetic disorder.
  • World Hemophilia Day
    World Hemophilia Day
    Fri, 17 Apr
    Online Platforms
    17 Apr 2026, 00:00 – 23:59
    Online Platforms
    On April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
  • World PID Week
    World PID Week
    Wed, 22 Apr
    Online Platforms
    22 Apr 2026, 00:00 – 29 Apr 2026, 23:59
    Online Platforms
    World Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
  •   FOP Awareness Day
      FOP Awareness Day
    Thu, 23 Apr
    Online Platforms
    23 Apr 2026, 00:00 – 23:59
    Online Platforms
    FOP Awareness Day is observed annually on April 23 to raise awareness of fibrodysplasia ossificans progressiva, a rare genetic disorder that causes soft tissues to gradually turn into bone.
  • Immunisation Week
    Immunisation Week
    Fri, 24 Apr
    Online Platforms
    24 Apr 2026, 00:00 – 30 Apr 2026, 23:59
    Online Platforms
    World Immunisation Week is a global campaign that takes place from April 24 to 30 each year. It aims to promote the life-saving power of immunization to protect people of all ages against vaccine-preventable diseases.
  • Malaria Day
    Malaria Day
    Sat, 25 Apr
    Online Platforms
    25 Apr 2026, 00:00 – 23:59
    Online Platforms
    World Malaria Day (WMD) is an international observance commemorated every year on 25 April to raise awareness and highlight the global efforts against malaria. Globally, 3.3 billion people in 106 countries are at risk of malaria.
  • Undiagnosed Day
    Undiagnosed Day
    Tue, 28 Apr
    Online Platform
    28 Apr 2026, 00:00 – 23:59
    Online Platform
    Undiagnosed Day—isn’t just a day, it’s a movement, a day not about the disease, to create awareness and action for People Living With Undiagnosed Diseases (PLWUD). There are too many people living with questions that remain unanswered.
  • International Noise Awareness Day
    International Noise Awareness Day
    Wed, 29 Apr
    29 Apr 2026, 00:00 – 23:59
    Online Platforms
    International Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
  • CF Genes Day 2026 - SACFA
    CF Genes Day 2026 - SACFA
    Fri, 22 May
    CF Genes Day
    22 May 2026, 00:00 – 4:50
    CF Genes Day, South Africa
    SACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
  • Swing for Independence Charity Golf Day
    Swing for Independence Charity Golf Day
    12 Jun 2026, 09:00 – 16:00
    Johannesburg, Illovo, Johannesburg, 2196, South Africa
    Join us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
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Physical Address

Kingfisher House, 39A Kingfisher Road, Fourways 2191 Johannesburg,

South Africa

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

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RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

Kingfisher House, 39A Kingfisher Road, Fourways, 2191, South Africa 

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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